Vitiligo & Me

Shortly after my 35th birthday three years ago, I started to notice a rapid change in my hands. But, let me back up a bit and explain another event that seemed inconsequential. I used to have this cute little scar on my thumb knuckle. I would stare at it on occasion. It was an itty bitty white patch of skin that’s not uncommon to scarring. I remember casually joking to myself “oh, I’m going to get that Michael Jackson disease,” shrugging it off and moving on.

oh, how I wish I had known not to joke – not that that would have made a difference…::sigh::

In a matter of a few short months, my hands deteriorated and lost pigment. In the back of my mind, I had a feeling I knew what it was, but I refused to give it a name – naming it means dealing with it, and I was stuck in this panicked, do-nothing, stick-your-head-in-the-sand mode to my own undoing. I researched a lot online and all signs pointed to…vitiligo. The lovely disease that

is NOT contagious

has no cure

doctors do not have definitive answers as to what causes it

is possibly inherited

is made worse by stress.

STRESS.

STRESS!!!

Just after our then annual trip to visit family in Virginia, I finally made an appointment to see a dermatologist so that she could rule out vitiligo and put my mind to rest. That didn’t happen. She confirmed my worst fears. Oh great, I remember thinking to myself. I get to be that person who everyone will stare at, wonder if they’re going to “catch it” – whatever it is that they think I have, and learn to live in seclusion. Not a bad idea considering I can easily get everything I need off the internet. Did I mention this happened just after I had accepted the chairperson role for our parish pastoral council? I wasn’t in a position to just ditch that responsibility – fortunately, my sense of obligation outweighed the perpetual feelings of helplessness as I started down the road of accepting this new diagnosis. The timeline went like this – birthday in April, noticed spots in May, rapid spreading of white spots through July, left to visit family in VA in August, came back to dermatologist and confirmed diagnosis on August 16. August 17 late evening – start Catholic Sistas due to several reasons, but the timing worked out that I needed that perfect distraction to combat the diagnosis. And, so it would happen that this blog was a lifesaver of sorts. It provided me the opportunity to use my hands in a way that would hopefully build up the Kingdom, but it wasn’t a way to numb the pain. I pulled back from my activities at church. Deep down I knew the healthy-minded thing to do was to grieve the diagnosis and wrap my head around what my future would look like.

A diagnosis of vitiligo carries with it the risk of other autoimmune diseases such as

hyperthyroidism,

adrenocortical insufficiency,

alopecia areata,

and pernicious anemia.

I was blessed with an amazing sense of self-worth and rarely do I care {much} what other people think of me. I’d like to be able to tell you that I was able to shrug all this off and put on my I don’t care what you think eyes. That wasn’t the case for me. I will start by saying I was already involved in our parish life and in many ministries, with many local friends. Were it not for that, the following would have been much much more difficult to deal with.

I fell into a really dark place for a while. I was glad for and blessed by the opportunity to manage Catholic Sistas as well as my monthly meetings on the Pastoral Council and all the responsibilities that came with that. I knew deep down that I wouldn’t be able to escape grieving things and I did allow myself to do just that. I spent a great deal of time reflecting upon {sometimes literally in the reflection of the mirror} vanity, women, women & vanity, and what our ultimate worth is in His eyes. Logically, this was a no brainer. And those were the times when I felt like I was just indulging in a pity party. I know I am beautiful in God’s eyes. I am the apple of His eye. So, why do I feel such despair? WHY do I care so much about what other people might think or if they would like me less because of something that is completely and utterly out of my control?

I wish my greatest concern was simple vanity – wrinkles, gray hair, etc. As I near 40, I can start to justify those complaints. When you lose your pigment, there’s really nothing you can blame it on. Or pinpoint its beginnings – or scream at. You just have to suck it up and accept it.

And that? THAT is hard.

I go back and forth between am I just being vain? and no, you are legitimately & justifiably emotional here – let it all out, Girl. I also struggled with the I don’t deserve to grieve over this because I’m not dying and there are worse things that could have happened. Yes, that’s true. But had I listened to that voice, I would have robbed myself the opportunity right to grieve, and grieve thoroughly at that.

After seven months of treatment at the dermatologist using UVB light therapy, I noticed the spreading slowed. Between my insurance dropping coverage and also finding out we were moving on a whim, I stopped my appointments. To date, I have not gone back and the spreading has gone from stopped to slowly starting up again.

And I find myself going round and round with bouts of stress…knowing full well how this cycle goes. Stress, grieve, get over it, rinse & repeat.

Were it not for finding out that a fellow parishioner lived with vitiligo – a woman and Mexican American as well! – I don’t think I could have overcome my grief as quickly as I did. She did not allow me to have a pity party, but allowed me to vent about my situation. She understood. She lived with it through her teenage years. She opted to depigment all of her skin and I always think about how beautiful she is. I think to myself if that’s what I have to look forward to, then call me the Mexican Snow White, please!

It’s not the being without pigment part that bothers me – it’s the transition.

I share this with you for many reasons, most of which have been that nagging Holy Spirit voice in the back of my mind telling me that it would be good to put out there, once and for all. I flat out rejected the idea of sharing it, but sometimes the advice I give others has to be the advice I myself am willing to take as well. The truth is that sharing can be cathartic. It can be a means of freeing oneself from the burden of carrying around baggage. For the most part, the timing of the creation of the blog has been the biggest blessing. It has helped me focus on what’s truly most important – not myself, and not easy. I find when I have too much free time, my mind will wander in the direction of questions that have no answers…and that always leads to stress. So, I keep myself happily and continually busy – with my home, my husband, my family, our homeschooling, parish life, and the blog and all that come with each.

Though it has taken some getting used to, and to some extent I give it credit for realigning my life in ways {I was able to get blood work done that confirmed I was ridiculously deficient in Vitamin D and start taking mega doses so I could function}, I still have not yet identified with it as something that is part of me. It’s not something I will bust out talking about in casual conversation, but I am learning to finally just admit that it’s there, instead of the {white} elephant in the room. I’m putting it out there because I know there are others out there who live with it and I would also love to connect with. It’s time to deal with it head on instead of pretending it doesn’t exist.

So, friends , if you would please add me to your prayer list – for continued peace of mind, for acceptance and surrender to His will in all of this, I would greatly appreciate it. If anyone reading this happens to know of a doctor or specialist who is making groundbreaking discoveries in treatment, I would also love to know. I am constantly reading up on the latest treatments and know of at least one doctor in Germany who is making huge strides in treatment, but I know it helps to have others looking as well.